Quality of life (QoL) is the ultimate goal of care for people living with dementia in long-term care (LTC). Nine out of 10 LTC residents have dementia or significant memory problems – and often they have poor QoL. Social factors, such as a person’s social support, race/ethnicity or financial situation are as critical for an individual’s QoL as their health or functional abilities. US research suggests that there may be disparities in QoL among marginalized populations such as LTC residents who are members of visible minority communities. Although maximizing QoL and fighting health disparities in LTC are key priorities in Canada, health authorities do not regularly measure these outcomes and we lack research on these issues. This is a serious problem. If we do not measure QoL and its reasons for frail, vulnerable, and often disadvantaged people living in LTC, these issues remain invisible and so we cannot improve them.
Funded by
In this study, we assess QoL of LTC residents with dementia. We also assess important resident and facility characteristics that may influence a resident’s QoL – such as a resident’s health, social support, or financial situation; and a facility’s size, ownership, or quality of care provided. We include almost 4,000 residents in 78 LTC Homes in Alberta, British Columbia, Manitoba, New Brunswick, and Nova Scotia. We share our findings with LTC homes, government decision makers, people in need of care and their family/friend care partners. We meet with them to discuss possible reasons for poor QoL, reasons for differences in QoL among groups of residents (e.g. male or female gender, low income), and strategies to improve QoL and disparities in QoL for LTC residents with dementia. This study is an important first step to prepare for intervention studies aiming to improve QoL and disparities in QoL for LTC residents with dementia.
Our study aims to compare QoL among subgroups of older adults living with dementia in LTC settings, who have various intersecting vulnerabilities – including residents at advanced stages of dementia who cannot self-report and who have no family member or friend to provide a proxy assessment. Three specific research objectives will address these pressing issues:
1. Assess QoL and associated social determinants, using mixed effects regression models, adjusted for resident, care staff, and LTC home covariates known to influence QoL, in a representative sample of ~6,350 residents in 127 LTC homes in Alberta (AB), British Columbia (BC), Manitoba (MB), Ontario (ON), and Nova Scotia (NS).
2. Identify, using covariate-adjusted multi-level latent class analyses, clusters of intersecting social deter-minants that perpetuate and reinforce QoL inequities among LTC residents.
3. Evaluate, through focus groups and knowledge users’ interpretations, the perceived usefulness and intended uses of data on LTC residents’ QoL and its social determinants.
Social determinants and other factors (covariates)
influencing LTC resident QoL
In this explanatory sequential mixed methods study, we use an integrated knowledge translation (iKT) approach to co-produce knowledge with knowledge users in all project phases. We first collected quantitative data on LTC residents’ QoL and its social determinants, from a representative sample of LTC homes in AB, BC, MB, ON, NS (objective 1). We then assess whether different clusters of intersecting factors can be found in those with the highest and lowest QoL (objective 2). Lastly we conduct feedback webinars with embedded focus groups with knowledge users (objective 3), to help us interpret our findings, discuss how results can be used to enhance care practices, and identify strategies to maximize QoL and minimize QoL inequities among LTC residents with dementia.
Our theoretical framework integrates 4 perspectives. 1) Social determinants of health – the idea that living conditions primarily shape the health and well-being of individuals, not just medical treatments or lifestyle choices. 2) A health equity framework that outlines important social factors sup-porting or impeding health equities. 3) Intersectionality – an analytical framework to understand how intersecting, overlapping social identities combine to create different modes of discrimination and privilege. 4) The Wilson & Cleary QoL framework adapted for LTC, which guided our selection of social determinants and model covariates. In alignment with our iKT approach, our collaborators participated in study conceptualization. For this first quantitative, large-scale evaluation of multiple intersecting social determinants of LTC resident QoL, we prioritize a focused set of social determinants that our stakeholders deemed highest priority. Data on these had been collected from residents and families by care teams, using items from validated Statistics Canada population survey
Study recruitment and data collection update:
– 71 LTC homes recruited (BC: 21, AB: 15, MB: 8, NS: 5, ON: 226)
– Collected data in 54 homes (BC: 16, AB: 12, MB: 4, NS: 4, ON: 18)
– Collected data for 3,231 residents (BC: 941, AB: 665, MB: 460, NS: 171, ON: 994)
– Collected data for 463 care staff (BC: 121, AB: 128, MB: 55, NS: 27, ON: 132)
Dr. Amit Arya
Dr. Carole Estabrooks
Dr. Hannah O’Rourke
Dr. Jordana Salma
Dr. Kelli Stajduhar
Dr. Malcolm Doupe
Dr. Pamela Jarrett
Dr. Melissa Ristau
Dr. Anna Beeber
Dr. Christine Kelly
Dr. Janice Keefe
Dr. Katie Aubrecht
Dr. Laura Hughes
Dr. Sube Banerjee
Dr. Stephanie Chamberlain
Study Coordinator:
Emily Dymchuk
Research Coordinator
University of Alberta
ECHA 5-305 | Edmonton | AB | T6G 1C9
dymchuk@ualberta.ca